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In addition to physical symptom burden, psychological suffering at end of life (EOL) is quite pervasive. As such, the interdisciplinary team in our Palliative and Supportive Care Unit strives to provide quality care sensitive to the physical and psychosocial needs of patients. Involving and allowing for the presence of family members is one way in which we afford our patients some additional comfort. Unfortunately, the current pandemic has placed limitations on this rather fundamental need for both patients and their family members. Here, we present a case illustrating the effects of visitor restrictions/isolation due to COVID-19 on the suffering of a patient at the EOL.
Case description
A male in his 20s with a refractory hematologic malignancy decided to pursue a comfort-based approach to care after a rapid clinical deterioration. Due to visitor restrictions, he had to face this decision with limited support at the bedside, which caused significant distress. He was forced to choose among several immediate family members who would be at his side through his hospitalization, to be his advocate, at times his voice, his confidant, and the person to relay all information to those on the outside. He expressed a wish to be married before he died, which occurred in our palliative care unit. This life goal was one we would normally encourage those he loved to gather around him, but this was not possible. He passed peacefully two days after he was married.
Conclusion
Although social limitations are necessary to help provide safety to the patients and staff in a hospital, they can have a direct impact on the suffering of patients and families at the EOL. Helping to maintain dignity, reflect on their life, and resolve any conflicts in the presence of family members is a benchmark for providing quality palliative care. Being barred from visitation due to isolation, threatens this care and lays the foundation for complicated grief among family members. Further research is needed to help balance the needs of those at the EOL with public safety. One such measure to help ease distress is to allow for more virtual visitation through electronic measures.
Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap.
Method
Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria.
Results
Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering.
Significance of results
This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.
This review provides an overview of the existing literature on the importance of care coordination for lung cancer care and other cancers in general. The review is inclusive of the burden of cancer, with a special reference to lung cancer, as well as challenges and achievements relating to cancer care coordination.
Method
We conducted a search of online databases of peer-reviewed studies published in the English language. The analysis for this review has been packaged into themes in order to generate results that can inform researchers and cancer health professionals, on the existing gaps necessary for developing appropriate intervention strategies and policy guidelines.
Results
Cancer is a complex condition that often requires multiple interventions provided by a variety of health professionals within the healthcare continuum. This paper reviewed research studies that explored the supportive care needs of cancer patients. The results are presented in three superordinate themes, namely (a) cancer as a healthcare priority in South Africa (SA), (b) making a case for coordinated cancer care in SA, and (c) care coordination: a poorly defined, yet complex concept. One major need identified was the requirement of informational support. Other essential needs included referral, emotional, and financial support.
Significance of results
The identification of current obstacles has the potential to guide the development of a model to improve quality coordinated cancer health care. It remains that limited research exists around cancer services and cancer care in the South African region. This narrative review identified common elements and barriers to care for lung cancer patients and survivors, and offers recommendations for developing clinical care models.
There is growing recognition of the importance of increasing preparedness for and the provision of palliative care in humanitarian crises. The primary objective of this review is to interpret the existing literature on culture and palliative care to query the recommendation that humanitarian healthcare providers, teams, and organizations integrate palliative care into their practice in ways that are attentive to and respectful of cultural differences.
Methods
A critical interpretive synthesis was applied to a systematic literature review guided by the PRISMA framework. Analysis was based on directed data extraction and was team based, to ensure rigor and consistency.
Results
In total, 112 articles covering 51 countries and 9 major worldviews met inclusion criteria. This literature describes culture as it influences perspectives on death and dying, expectations of palliative care, and challenges to providing culturally sensitive care. A key pattern highlighted in articles with respect to the culture and palliative care literature is that culture is invoked in this literature as a sort of catch-all for non-white, non-Christian, indigenous practices, and preferences for palliative care. It is important that humanitarian healthcare providers and organizations aiming to enact their commitment of respect for all persons through attention to potential culturally specific approaches to pain management, suffering, and dying in specific crisis settings do so without reproducing Othering and reductionistic understandings of what culturally sensitive care in humanitarian crises settings involves.
Significance of results
This paper clarifies and unpacks the diverse influences of culture in palliative care with the goal of supporting the preparedness and capacity of humanitarian healthcare providers to provide palliative care. In doing so, it aids in thinking through what constitutes culturally sensitive practice when it comes to palliative care needs in humanitarian crises. Providing such care is particularly challenging but also tremendously important given that healthcare providers from diverse cultures are brought together under high stress conditions.
This report describes a case of concurrent engagement in Meaning-Centered Psychotherapy (MCP) and Meaning-Centered Psychotherapy for Caregivers (MCP-C), brief, structured interventions designed to address existential distress in patients with cancer and cancer caregivers.
Method
Descriptions of the independent courses of MCP/MCP-C treatment for a patient with Glioblastoma Multiforme and his caregiver are provided with both unique and shared themes around sources of meaning highlighted.
Results
The patient and caregiver each experienced enhanced well-being as a result of receiving MCP and MCP-C, as well as shared benefits of deepened connectedness. Engagement in MCP/MCP-C had important implications for their experience of the patient's end-of-life and the caregiver's bereavement.
Significance of results
MCP and MCP-C are interventions typically delivered independently to patients and caregivers. The individual and shared benefits derived from MCP/MCP-C by this patient and caregiver point to the potential benefits of concurrent engagement and the need for future dyadic research on MCP/MCP-C.
Disclosing the truth when breaking bad news continues to be difficult for health professionals, yet it is essential for patients when making informed decisions about their treatment and end-of-life care. This literature review aimed to explore and examine how health professionals, patients, and families experience truth disclosure during the delivery of bad news in the inpatient/outpatient palliative care setting.
Methods
A systemized search for peer-reviewed, published papers between 2013 and 2020 was undertaken in September 2020 using the CINAHL, Medline, and PsycInfo databases. The keywords and MeSH terms (“truth disclosure”) AND (“palliative care or end-of-life care or terminal care or dying”) were used. The search was repeated using (“bad news”) AND (“palliative care or end-of-life care or terminal care or dying”) terms. A meta-synthesis was undertaken to synthesize the findings from the eight papers.
Results
Eight papers were included in the meta-synthesis and were represented by five Western countries. Following the synthesis process, two concepts were identified: “Enablers in breaking bad news” and “Truth avoidance/disclosure.” Several elements formed the concept of Enablers for breaking bad news, such as the therapeutic relationship, reading cues, acknowledgment, language/delivery, time/place, and qualities. A conceptual model was developed to illustrate the findings of the synthesis.
Significance of results
The conceptual model demonstrates a unique way to look at communication dynamics around truth disclosure and avoidance when breaking bad news. Informed decision-making requires an understanding of the whole truth, and therefore truth disclosure is an essential part of breaking bad news.
Conventional psychotherapy with a lengthy and regular number of meetings is no longer relevant in the case of COVID-19, when persons with psychiatric problems, especially COVID-19 patients/clients, really require immediate psychological assistance. It is recognized as a “rapid test” in the field of body health to rapidly decide whether or not a person is affected by COVID-19. So, we should now be able to use the term “rapid tele-psychotherapy” with Single-Session Music Therapy (SSMT) in the field of mental health to characterize the mechanism of assistance provided to persons who seek therapeutic assistance virtually during this COVID-19 outbreak, so that they will easily and reliably be freed from troubling psychiatric issues.
Method
The author reports the case of a 33-year-old widow with asymptomatic COVID-19 who was admitted to her own home.
Results
The author describes the effectiveness of the implementation of rapid tele-psychotherapy with SSMT in reducing the scale of anxiety, panic, fear, depression, acute stress, insomnia, and delusions of death.
Significance of results
This case can provide new inputs or ideas for counselors/psychologists/psychiatrists/therapists who work in hospitals/institutions to provide rapid tele-psychotherapy with SSMT as therapeutic assistance for individuals who need psychotherapy in this COVID-19 outbreak, especially for COVID-19 patients/clients. Besides that, this concept is not only suitable for rapidly screening individuals that may face psychological problems and helping them better seek therapeutic assistance, but can also be used as an adjuvant therapy for psychiatric patients.
Naldemedine, an oral peripheral μ-opioid receptor antagonist, was developed for the treatment of constipation, a side effect of opioid use. Naldemedine is not generally recognized as causing opioid withdrawal in which associated symptoms affecting the central nervous system.
Method
From the series of cancer patients undergoing symptom management, we report a case treated with naldemedine for constipation in relation to the use of opioids for cancer pain and who displayed severe psychological symptoms associated with withdrawal immediately after the use of naldemedine.
Results
The patient was a 36-year-old woman diagnosed with cervical cancer Stage IIB, PS3. When the patient, who was using oxycodone hydrochloride hydrate (80 mg/day) for ileal pain, was started on naldemedine for constipation, she complained of sweating after just 5 min and hallucinations after 1 h. The patient also displayed physical/behavioral abnormalities such as diarrhea and hyperactivity, and psychological abnormalities such as aggression toward staff.
Despite the psychiatric symptoms worsening over time, there were no abnormalities in terms of blood biochemical data, and no brain metastasis was observed on MRI. Based on the Clinical Opiate Withdrawal Scale, these symptoms were judged to indicate opioid withdrawal. Naldemedine was discontinued due to naldemedine-related opioid withdrawal syndrome and, thereafter, the psychiatric symptoms diminished, with no recurrence of similar symptoms observed to date.
Significance of results
If mental and behavioral abnormalities occur in patients receiving naldemedine, it is necessary to consider the possibility of opioid withdrawal syndrome as a differential diagnosis.
Spiritual distress is a common symptom among patients with cancer. Spiritual injury (SI), a type of spiritual distress, occurs when there is a breakdown in the relationship between the individual and their higher power. Patients who experience spiritual injury may have poor health outcomes.
Methods
A case report of a woman with stage IV non-small cell lung cancer who had experienced a SI.
Results
The palliative care team, in collaboration with the palliative care chaplain, was able to recognize that the patient had experienced a SI. They were able to help the patient to process and reflect upon this experience and ultimately treat her suffering.
Significance of results
All palliative care providers should assess their patients’ spiritual health and monitor for the existence of SI.
Advance care planning is vital for ensuring individuals receive end-of-life care that is consistent with their care preferences and improves patient quality of life and satisfaction with care; however, only 11% of Americans have discussed advance care planning with a healthcare provider. Individuals with limited health literacy are even less likely to participate in advance care planning due to difficulty comprehending complex health information. The purpose of this review was to identify randomized controlled trials designed to address the effects of limited health literacy on advance care planning, evaluate the quality of these studies, and summarize evaluation data to inform future studies.
Methods
This systematic review examined randomized controlled trials published from January 1997 to July 2020 using the PubMed, CINAHL, PsycINFO, and Scopus databases. Data were extracted and two reviewers independently evaluated the quality of studies using the Joanna Briggs Institute Critical Appraisal Tool.
Results
The database search yielded 253 studies and five studies were included in the final review. Studies were conducted in mostly White patients in outpatient clinics in the United States. Researchers wrote text at lower reading levels, added images to materials, and created videos to enhance communication. Health literacy interventions increased participant knowledge, preference for comfort care, engagement, and care documentation; however, several methodological issues were identified, including baseline differences in treatment and control groups, issues with blinding, lack of valid and reliable outcome measures, and inappropriate statistical analyses.
Significance of results
More high-quality intervention studies that address the effects of limited health literacy on advance care planning in diverse populations and settings are needed. Future intervention studies should use reliable and valid instruments to measure advance care planning outcomes. Clinicians should use materials appropriate for their patients’ health literacy levels to address their advance care planning needs.
It is well known that the burden on the families of cancer patient extends across many aspects, but there have been no reports of family members developing delirium due to the burden of caring for a cancer patient.
Methods
We reported a caregiver who developed Wernicke encephalopathy (WE) while caring for a family member with advanced cancer.
Results
The subject was a 71-year-old woman who had been caring for her husband, diagnosed with gastric cancer and liver metastases, for 5 months. She visited the “caregivers’ clinic” after referral by an oncologist who was worried about a deterioration in her mental condition that had appeared several weeks previously. The woman had a history of diabetes mellitus. Some giddiness was observed and, based on her inability to answer questions, her level of consciousness was checked and some disorientation was observed. She was diagnosed with delirium. A blood sample was collected to investigate the cause of the delirium, but the test data showed no hypoglycemia. Her appetite had declined since her husband was diagnosed with cancer. Thiamine deficiency was suspected as thiamine stores in the body are depleted within about 18 days and her loss of appetite had continued for 5 months. On intravenous injection of 100 mg of thiamine, her consciousness level was returned to normal in 1 h. A diagnosis of WE was supported by the patient's abnormally low serum thiamine level.
Significance of the results
The family members of cancer patients may develop a loss of appetite due to the burden of caring, resulting in WE. When providing care for signs of distress in family members, it is necessary to pay attention not only to the psychological aspects but also to their level of consciousness and physical aspects, particularly the possibility of serious illness resulting from reduced nutritional status.